Emily's Battle with Batten

Emily's Battle with Batten On 20th January 2022 we received the devastating news that our beautiful 10 year old daughter Emily has a life-limiting condition called Batten Disease.

On 20th January 2022 our hearts were broken when we received the devastating news that our beautiful 10 year old daughter Emily has a life-limiting condition called Batten Disease. Batten Disease is a rare neurodegenerative disorder that causes blindness; epilepsy; difficulties sleeping; the decline of speech, language and swallowing skills; and a deterioration of fine and gross motor skills that

result in the loss of mobility. Unfortunately there is no cure for Batten Disease and children suffering from this condition don't often live longer than their teens. In 2020 Emily started to lose her vision and is now severely visually impaired and on the blind register. Her sight continues to deteriorate and we don't know how much longer she will be able to see for. This has been tough for Emily but not once has she complained and she still tries to give as many things a go as she can. Her speech is now regressing too, which can be frustrating for her as she has so much she wants to say but really struggles to get her words out clearly. Emily is the kindest, sweetest, most gentle and loving girl that you could ever meet. She does not have a bad bone in her body and her happy nature can't help but make you smile. She loves to talk (we literally can't stop her sometimes) and she keeps us laughing every day. Her strength and resilience the last few years make us beyond proud, she doesn't let this disease get her down and always has a smile on her face. Emily has a lovely relationship with her big brother Lewis and I'm devastated too, for him, that he will have to watch his little sister get so poorly. Neither of them deserve for this to be their childhood. Another thing you should know about Emily is that she LOVES Harry Potter! I'd even go as far as saying she is obsessed! She often tells us to call her Harry and not Emily and spends most of her time at home in her Gryffindor robes whizzing around on her broomstick. When we left the hospital in January we were told to go away and make as many memories as we can with Emily. So that is what we plan on doing. Unfortunately this disease can progress quickly so we don't know how much time Emily has to be able to have new experiences and create those memories. Our aim is to raise some money in order to be able to do as many things as we can with her from her bucket list. We would love to take her for a meal at the Leaky Cauldron and wand shopping at Ollivanders, to see The Cursed Child on the West End in London, or on a holiday where she can spend carefree hours splashing in the pool. We know these things won't all be doable but Emily deserves the world and more and we will try our hardest to give her the best life possible. We will be organising lots of fundraising activities so if you'd like to get involved please contact us.

11/06/2026

Here's the list of teams for Emily's Battle with Batten World Cup Sweepstake. It was done before the first game started but Emily had a club tonight so we've only just got chance to post it.

Good luck everyone 🤞🏼

1) Tina Bean - Saudi Arabia
2) Phil Bean - Cape Verde Islands
3) Joanne Gibson - New Zealand
4) Nathan Gibson - Tunisia
5) Ross Clark - Iran
6) Danny Shepherdson - Bosnia and Herzegovina
7) Kath Thompson - Egypt
8) Paddy Thompson - Sweden
9) Kath Thompson - Croatia
10) Paddy Thompson - Germany
11) Jacky Hunter - Czech Republic
12) Paul Hunter - Portugal
13) Julie Williams - Uzbekistan
14) Ross Carr - Curacao
15) Jamie - Côte d'Ivoire
16) Thomas - Iraq
17) Katie Pymer - Mexico
18) Mark Pymer - Switzerland
19) Lauren Pymer - Jordan
20) Ryan Pymer - Paraguay
21) Tony Millson BA - Korea Republic
22) Darren Lethem - Belgium
23) Wayne Johnson - Ghana
24) Dom Fellowes - Japan
25) Joanne Locke - Haiti
26) Angela Gregory - Ecuador
27) Karen Andrews - Columbia
28) Tracy Atkinson - Norway
29) Abigail Garrod - Australia
30) Emma Hodgson - Netherlands
31) Laura Bell - France
32) Mark Daddy - Qatar
33) Emma Hodgson - Scotland
34) Ray Todd - United States
35) Ray Todd - Morocco
36) Paul Taylor - Uruguay
37) Paul Taylor - Turkey
38) Danny Shepherdson - Congo DR
39) Tina Bean - South Africa
40) Phil Bean - Austria
41) Rebecca Bolton - England
42) Rebecca Bolton - Panama
43) Richard Boughton - Canada
44) Richard Boughton - Algeria
45) Jo Symington - Argentina
46) Tony Millson - Spain
47) Emily Atkin - Senegal
48) Rebecca Mackay - Brazil

⚽🧡⚽🧡⚽Update - we now have 48 Entries to our world cup sweepstake. A huge thank you to everyone who has entered. If peopl...
11/06/2026

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Update - we now have 48 Entries to our world cup sweepstake. A huge thank you to everyone who has entered. If people could make payment for their entry as soon as possible that would be great. If you need Emily's bank details to make payment then please just send us a message.
We will be drawing teams later today so please keep your eyes peeled for your team (or teams if you have multiple entries)

As always we appreciate your support and your efforts getting involved in all the fundraising we do. We wish you all the best of luck and hope that you enjoy this year's world cup

It's coming home ⚽🏴󠁧󠁢󠁥󠁮󠁧󠁿⚽🏴󠁧󠁢󠁥󠁮󠁧󠁿⚽

⚽🏴󠁧󠁢󠁥󠁮󠁧󠁿⚽🏴󠁧󠁢󠁥󠁮󠁧󠁿⚽

With the start of the World Cup being only days away we thought we would see if anyone would like to get involved in a sweepstake.

There are 48 teams in the tournament and we are thinking £5 per entry (you can have more than one entry if you want). Once we have 48 Entries we will randomly select teams.
The winner will take half of the prize pot and the other half will go towards Emily's fundraising pot, so you could potentially win £120.

If you would like to join in just let us know and we'll get your name put down 😊

We still have 10 entries left for our world cup sweepstake. There is 11 hours left to go before kick off and we would li...
11/06/2026

We still have 10 entries left for our world cup sweepstake.
There is 11 hours left to go before kick off and we would like to have these 10 entries taken so we can draw teams before the world cup officially starts.

If you want to grab one of the last 10 entries then please just comment on this post and we will get your name in the draw.
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⚽🏴󠁧󠁢󠁥󠁮󠁧󠁿⚽🏴󠁧󠁢󠁥󠁮󠁧󠁿⚽

With the start of the World Cup being only days away we thought we would see if anyone would like to get involved in a sweepstake.

There are 48 teams in the tournament and we are thinking £5 per entry (you can have more than one entry if you want). Once we have 48 Entries we will randomly select teams.
The winner will take half of the prize pot and the other half will go towards Emily's fundraising pot, so you could potentially win £120.

If you would like to join in just let us know and we'll get your name put down 😊

10/06/2026

Meet Evie! Her lovely mum Lynne shared her thoughts with us for awareness day,

"I wish people realised what Batten disease entails, that there are various different types depending on the gene mutation and that within each type the children may present very differently and have a very different disease progression."

Visit our campaign page here and help us to continue to support families who need us. https://donate.biggive.org/campaign/a05WS00000EmkQHYAZ

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Just 10 spaces left in our world cup sweepstake. We would love to have this filled before kickoff tomorrow. Just comment...
10/06/2026

Just 10 spaces left in our world cup sweepstake. We would love to have this filled before kickoff tomorrow. Just comment or pop us a message to enter.

⚽🏴󠁧󠁢󠁥󠁮󠁧󠁿⚽🏴󠁧󠁢󠁥󠁮󠁧󠁿⚽

With the start of the World Cup being only days away we thought we would see if anyone would like to get involved in a sweepstake.

There are 48 teams in the tournament and we are thinking £5 per entry (you can have more than one entry if you want). Once we have 48 Entries we will randomly select teams.
The winner will take half of the prize pot and the other half will go towards Emily's fundraising pot, so you could potentially win £120.

If you would like to join in just let us know and we'll get your name put down 😊

10/06/2026

Next up this is Jessica! Her mum Gail bravely shared these powerful words with us to share today,

“Batten Disease is unforgiving in every sense. There are few people in the world who truly understand what this condition does to a family. It breaks your heart into a million pieces and you have to find the glue to patch yourself together.
Batten Disease splits your life into a 'before' and 'after' battens and you have to let go of what you visualised your life and your children's lives would look like.
We become a nurse, dietitian, physio, o/t, medical secretary, speech and language therapist - the list is endless but the most important position we hold is a parent.”

Help us to continue to support families like Gail's,
➡DONATE HERE: https://donate.biggive.org/campaign/a05WS00000EmkQHYAZ

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10/06/2026

This is Eli! 🩵
His amazing mum Sarah shared these heartbreaking words about the reality of a Batten disease diagnosis with us for Awareness day.

“I wish people understood that you are mourning from the moment your child is given a diagnosis of Batten Disease”.

By supporting the BDFA, you are helping our family support team be there for families like Sarah and Eli, we couldn’t do it without your donations.

Please donate if you can to our campaign. 🧡
DONATE HERE https://donate.biggive.org/campaign/a05WS00000EmkQHYAZ

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10/06/2026
10/06/2026

As Batten disease is so rare, raising awareness and advocating for affected families is a vital part of the work we do at the BDFA. We are incredibly grateful to the families who have shared their heartfelt experiences to help shine a light on life with Batten disease this Awareness Day.

Next, we hear from Cheryl, mum to the beautiful Mabel:

"I wish people realised how heartbreaking it is to watch your child slowly lose the skills you once celebrated – the ability to walk, run, play with friends, feed themselves, or simply hold a cup.
I wish people realised how devastating it is to see your family and friends grieve for the sister, cousin, niece, and granddaughter they had dreamed of. I wish people understood how unbearable it is to imagine a future without them in it.
We stand together with our fellow Batten warriors on this unimaginably painful journey."

By sharing stories like Cheryl's, we hope more people will understand the devastating reality of Batten disease and the importance of ensuring that no family faces it alone.

💙DONATE HERE https://donate.biggive.org/campaign/a05WS00000EmkQHYAZ

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Cottingham
Cottingham
HU164

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